Autism, Depression, and Chronic Pain – Oh My!

poor

Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.

Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).

I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.

Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).

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On Facebook I shared a post about some tax changes that are being made to churches and non-profit institutions. The debate that started, made me think about my own experience working for a non-profit organization and I wanted to share a little bit of that here. For around 6 months or so, I worked for a non-profit religious hospital system. My job was to be one of the people in the emergency department who collected patient information (especially insurance information) and processed payments.

From the beginning, it was drilled into us that it was about the money. We were hounded to make sure we collected certain percentages of money from patients while they were still there in the building, whether they could afford it or not. We were encouraged to apply pressure to them to pay at least a percentage that day, regardless of their personal circumstances. Although patients could legally ask to be billed later, we were told to NEVER tell them that, and only offer that option if they brought it up first.

We were told bluntly that the hospital had to make sure to look like they were doing enough “public outreach” to keep their non-profit tax status, so when they did run public assistance programs we were told to advertise them when talking to patients. It became clear that they didn’t necessarily do programs for the poor because they CARED about them, it was so they could continue to get the tax breaks and other non-profit advantages. I heard so much negative talk there about Medicaid patients and the poor. I was also told flat out that the company was purposefully looking into opening more locations in areas where the people were more likely to pay, and closing locations where the populations were poorer.

One huge issue I had was that even when someone was brought to the ER and died, we were pressured to try to get money from their grieving relatives. More than once, those in charge actually chose not to tell family members that their loved one had passed away until AFTER we collected insurance information and copays/deductible payments. They would send us in, and we would know the family’s loved one was gone, but we were told to lie and pretend we knew nothing. This killed me to have to do. One time a lady begged me for information on her husband who was dead, and I couldn’t tell her anything. I also struggled to go up to a mother whose child has just tried to commit suicide and ask her for money. I felt like scum.

In the end, I couldn’t keep this job due to my own health issues, but I couldn’t have kept doing it with a clear conscience either.

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Ok, so I had another subject planned for today’s post, but I need to rant a bit, so I’ll save that topic for later. I hope you won’t mind listening to my frustration today.

So, I’m part of a group on Facebook for people with certain mental issues, and I have noticed many of the people in the group getting social security disability solely for those mental issues, which I happen to share. I am not upset that they got disability for their problems, but I can’t help but compare it to my own situation and feel angry at how I have been treated by the system.

I’ve been fighting for several years to try and get disability benefits, my worst conditions that affect my ability to work are: Bipolar Depression, Asperger’s, PTSD, social anxiety disorder, fibromyalgia, chronic fatigue syndrome, IBS, degenerative disc disease and bulging discs, chronic bronchitis/ear infections, and severe plantar fasciitis. ALL THAT and yet I am still fighting! It pisses me off because I know people who got it much quicker for SO MUCH LESS or just ONE of my conditions. And none of these conditions are light, even the last rejection letter from social security said the conditions are indeed severe…and yet I got turned down AGAIN? I have a plethora of medical evidence and have tried to follow medical advice to the letter. What more can I do???

I DO have an attorney (my 2nd actually), and I am now waiting for a court date, the 2nd time I will have to go to a hearing for this. The last judge I got had a record for barely approving anyone, which seems unfair in itself. How can it be a fair system when some judges approve a majority of people and other judges approve hardly anyone? Were it not for my husband, I would likely be homeless by now.

To make matters worse, one person in the Facebook group insinuated that plantar fasciitis and chronic ear infections/bronchitis aren’t severe enough to affect your ability to work long term. Well, I’ve had the plantar fasciitis for 15 YEARS. I’ve seen specialists, done meds, physical therapy, long-term steroid therapy, custom orthotics, cortisone shots, nothing helped. Doesn’t seem like it will magically get better at this point. It is so severe I have a noticeable limp and have almost passed out from the pain at times when I was forced to be on my feet for long periods of time.

As for the recurring infections, I’ve had chronic ear infections and bronchitis for many years, often getting up to six within a six month period. I’m now on my 3rd course of antibiotics this year (2018) for the chronic ear infections and bronchitis. Again, I’ve seen specialists, tried a host of medications and other treatments (both medical and alternative) and nothing has worked so far. The amount of antibiotics I have had to take has led to issues with antibiotics not working as well anymore, worsening IBS symptoms, and even episodes of MRSA, C Diff, and colitis which I had to be hospitalized for. These are not minor, fleeting problems.

To make matters worse, I have TRIED to work while fighting for disability. The last job I had (working only two days a week) I was let go from for missing work too much due to medical issues, most of which I was in the hospital or ER for, so they know I wasn’t just “faking”. I also tried being a greeter at Walmart, since it is about one of the only places that actually hires really disabled people and I couldn’t even do that due to my social anxiety, depression, and other health issues. I am not even fighting for welfare here, only the benefits I worked for over the years!

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On social media and in real life, I hear a lot about how the poor “take advantage” of the system and how they “waste what they have” or are “just plain lazy”. Of course, these comments always seem to come from people who are at least close to middle class and have never once gone truly hungry, been homeless or lost everything they have through some cruel twist of fate. Having grown up in a mostly one-parent family that did accept government and charity assistance on occasion (even though my mother often worked MORE than full time), I see a different perspective.

Sometimes the decisions that the impoverished make do contribute to their own problems, but often this is due to poor foresight or desperation. They may make rash decisions based on immediate needs and not long-range goals…but that is because they are worried about survival right now and fighting for survival tends to occupy all your attention. When every day of your life is spent wondering how you will eat and find or keep shelter, there is not much energy left for self-help philosophies or economical posturing. Glimmers of hope might break through here or there (a better job, higher education, etc.), but often these desires are washed aside by the necessity of making it through this month, this week or even this day.

I will admit that on occasion the impoverished may seem to purposefully waste money. Buying a lottery ticket, cigarettes, alcohol or junk food may seem like a huge waste when someone is down to their last dollar. So why do they do it? I think it is like Vincent Van Gogh once observed, they are attempting to “revolt against the misery” of poverty. They are laughing in the face of danger and saying that this miserable world isn’t going to steal every bit of enjoyment from them. It is not really wise, but it is an emotional reaction to a life that often seems to have no hope or end.

Perhaps it is for the same reason that so many employees (even those in low paying management positions) steal from the big, impersonal corporations they serve, even if all they take home is a box of ball point pens or a few rolls of toilet paper. I’m not saying stealing is right, but in the human mind, there is always the desire for the underdog to score a triumph (even a tiny one) over who they see as the big bully on the block. All of these seemingly poor decisions are really just a way for those who feel ignored and despised to give this unfair, greedy world the middle finger. A way to quietly rebel, even if no one notices.

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Over the years I have heard some of my fellow Christians say truly awful things about the poor, the disabled and the needy. In one conversation a fellow Christian declared that the poor “deserve to be poor” and almost always cause their own problems. I have heard similar sentiments from other Christians that almost always make me want to wince in discomfort.

I have also heard fellow Christians (and Fox News) say repeatedly that most people on disability are able to work and are just lazy people who want to rely on the government. I’m sure if they knew firsthand how hard it is to get disability, how long it takes and how worthless and depressed many disabled people feel when unable to work, they might change their minds. If they went through it themselves or someone else in their immediate family needed those services, you can almost guarantee their opinion might change. I would say the same for other services for the poor, such as food stamps and Medicaid.

When I hear negative comments about the poor and disabled from anyone in the Christian community, I can’t help but think of these verses:

“He who oppresses the poor shows contempt for their Maker, but whoever is kind to the needy honors God.” Proverbs 14:31.

“If a man shuts his ears to the cry of the poor, he too will cry out and not be answered.” Proverbs 21:13

“Defend the cause of the weak and fatherless; maintain the rights of the poor and oppressed. Rescue the weak and needy; deliver them from the hand of the wicked.” Psalm 82:3-4

“Do not oppress the widow or the fatherless, the alien or the poor. In your hearts do not think evil of each other.” Zechariah 7:10 (The word “alien” in this also makes me think about our treatment of immigrants – legal or otherwise).

“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’ Matthew 25:37-40

“Jesus looked at him and loved him. “One thing you lack,” he said. “Go, sell everything you have and give to the poor, and you will have treasure in heaven. Then come, follow me.” Mark 10:21 (Jesus commanded this kind of extreme sacrifice and yet we balk at helping the poor in even small ways?)

“Sell your possessions and give to the poor. Provide purses for yourselves that will not wear out, a treasure in heaven that will not be exhausted, where no thief comes near and no moth destroys.” Luke 12:33 (I’m sensing that Jesus really wasn’t a materialistic guy and didn’t want his followers to be either. Could be wrong there, but I definitely get that feeling.)